Are symptoms from inflam. or autoantibodies....why some "remit&#34

[eljomom]

pandas16...I was hoping you would chime in So if Cunningham is high, that means that the cytokines are still running around, but WHY?? And if they are still circulating, then that means the BBB is staying open? for the auto-antibodies to get in and muck things up in the b.g.? Aren't cytokines and macrophages from current infection?? What about "chronic" kids, where there appears to be no infection??

I think they also interfere with dopamine signaling, right??

 

momwithocdson....this also leads to your statement, which I could not agree with more (even though not necessarily about glutamate only....) that it matters what came first, the chicken or the egg, in how we treat.

 

 

I thought that pro inflammatory cytokines and macrophages weaken the blood brain barrier and allow auto antibodies to interfere with neuronal signaling--- most notable glutamate which explains the swelling of the caudate nucleus. I don't think it's known why some kids explode with symptoms and others go completely back to normal, but it makes sense that the longer the inflammation and the younger the age the problem starts the more problems you will have.

[Guest pandas16]

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Edited May 3, 2011 by pandas16

[dut]

Hi - yeh I've had it explained to me the same as you did, pandas16, that the autoantibodies keep seeing basal ganglia (if the BBB is open)and consequently, keep circulating but... if PANDAS is similar/same etiology to rheumatic fever and Sydenham's then how come that doesn't happen in rheumatic fever for example? I don't know much about it but I've assumed that in rheumatic fever you don't get continual production of autoantibodies cos the body keeps seeing heart or joint tissue and this made me wonder about that explanation for PANDAS.

 

For my kids it felt more like stuff was circulating (or not depending on trigger status) and what matters more is the state of the BBB and maybe that's why chronic illness can be such an issue 'cos you get the double whammy needed of auto antibodies and breached BBB cos of inflammation... but I dunno...

[coachadamb]

PhillyPA,

Dr. Chugani is an amazing Doctor but more than that he is an amazing person. His giving and compassion for our children is evident in every area of his life. Dr. C will actually sit and talk with you inviting your questions and answering them honestly. In Nathans case, the pet scan showed the worse inflammation he has seen to date. Dr. C has done approximately 32 pet scans for pandas kids of which 1500 dollars comes out of his pocket for each test. Dr. C honestly doesnt know to what extent nathan will heal. In his professional opinion and based on success with past therapies, IVIG is nathans best course of action for any chance of recovery. With regards to radiation exposure. It is far less than the radiation exposure you get with having a cardiac stress test. The isotope used in the stress test can stay in the body for up to thirty days, where as the tracer used by Dr. C is made after you arrive for the test because it is only usefull for a matter of a couple of hours. The trade off to find out what is causing Nathans spiral is worth 55 minutes of exposure. You are correct Philly is that PANDAS in Theory does not cause permanent brain damage and it may never cause it, and I think i may have implied in my earlier post that it did, and I will correct myself publically; however I know first hand that if an inflammation is left untreated it will begin to cause damage and I think thats where I confused the readers.

 

I believe Nathan first showed signs of PANDAS at around age 6. He had and continues to have bouts with strep. An er doctor diagnosed him about 5 years ago. The doctor was a young doctor and had seen 1 case during his residency, but it went no further than a dose of atavan for the "tics". 2 years later in another hospital er he was again confirmed with PANDAS, and again sent home after a dose of atavan. Thus my quest into the world of PANDAS and most recently the relationship with Dr. Chugani and his team. Philly, if you have a PANDAS child I would encourage you to seek his help or become involved in his research, the outcome will help our children all over the world.

Adam

 

Adam I have heard amazing things about Dr. Chugani. I was recently discussing this doctor with Diana P and he is one of the only people able to scan the brain/basil ganglia the way he does. It is a lot of radiation so I hesitate to get involved in his research. His research will be so valuable to PANDAS. I know that in theory pandas does not cause permanent brain damage but I guess we will all see if that is true in the years to come.

 

I am curious - what does Dr. Chugani believe that outcome will be for your child? How long has your child had pandas?

[coachadamb]

Jill,

My apologies I did not mean to confuse you or anyone else. 1st, with regards to brain damage, I stated that it was my opinion, and that is based on personal experience, that if inflammation is left untreated it will cause damage I did not mean to imply that PANDAS causes brain damage and I am truly sorry if parents took it that way.

2nd. You are exactlly correct in the auto-immune process, you have done your home work well. I should have used the medical terms correctly instead of referring to one of the bacteri that can start the whole process. I did not mean to miss lead anyone.

 

I have heard good things about Dr K. and Dr K. in Chicago, Fortunately Dr. Chugani was the only one that would take Nathan on as a patient. The inflammation in the right frontal lobe and the Basal ganglia is the worst he has ever seen. I have read many articles and spoken to several researchers and will continue to meet and speak with them. I can't wait untill there papers are published. We are going to find that this disease encompasses every area of modern medicine from the endocrinologist, immuniologist to neurology, psychology and homeopathology. I like to call it one universe for our kids..Where else can you get every facet of medicine working together for the greater good for our cuildren.

 

Jill thank you for the good wishes for nathan, i will keep everyone posted on the outcome of the treatments.

 

Adam

 

 

Adam,

 

Your post is very confusing to me. Your doctor told you the strep A bacteria is in the brain? Not my understanding. The Basal Ganglia is inflamed from anti-neuronal antibodies attacking it ( these menacing antibodies think they are attacking strep because of molecular mimicry.) The auto-immune process can be in full swing even after the infection has been eliminated; those bad, anti-neuronal antibodies can be cranked out in a chronic fashion and that is what is causing the inflammation of the basal ganglia via breach of the BBB.

 

I would also ask this doctor where he is getting his info regarding permanent brain damage. Again, not my understanding after seeing 4 PANDAS experts and reading this board over a year; quite the opposite. You can also search the forum or tagged literature that refers to a significant percentage (>40%) of children who "outgrow" PANDAS (post) puberty with no residual symptoms (or damage.) I don't think anyone can say there is NEVER a possibility of damage, but all the brain damage chatter is speculation.

 

I'm not one fluent in quoting the research as many on here are..... There is a FAQs page pinned at the top that can better articulate these points. I would agree with you on the importance of early intervention to minimize the impact of PANDAS symptoms that sour or devastate childhood. Dr. K used to claim that treatment was most effective if it began before the onset of puberty, but more recently he has treated some older patients as well.

 

Best wishes that Nathan experiences some symptom relief from treatment.

 

Jill

[JAG10]

Adam,

 

I have only had a SPECT scan done for my older dd11 and it was done when she was 7. I took her to the AMEN clinic in VA because, at that time, we thought it was severe ADHD primarily and OCD as a second runner up. SPECT scans are not known for their precision and many MDs will dismiss them for that. What the scan did show was global over-activity around the perimeter and anterior cingular gyrus which I was told was the "gear-shift" for the brain and what is an issue in OCD-like behaviors (getting stuck, obsessed, grudges, fixations, ect)

 

I was told she had Ring of FIre ADHD which is a combination of severe ADHD, OCD and mood disorder (even though she has never been a rager, TG!) I shared a copy of these scans with Dr. K when he was treating my dd and he found them interesting. But AMEN had NO idea as to the underlying cause. I have since tried to email Dr. Amen about us 3 years later discovering the underlying cause was PANDAS, but he is quite the celebrity and not easy to get to, if you know what I mean.

 

Are you saying Dr. K thought Nathan was too old for treatment by him? I thought I had heard that he had treated some young adults as old as 20 recently. Well, kudos to Dr. Chugani for being a bold pioneer of medicine! Nobody's child, no matter how old, she be told they are too old to try and obtain some relief of symptoms for the highest quality of life possible. When I first took dd, 9 at the time, to Dr. Elia at CHOP, she said that my dd had had PANDAS too long for treatment other than SSRIs which had not worked up until that point anyway. She was soooo wrong!!! We have been to 3 PANDAS docs since, she has been off all psych meds since last May and she is 85% symptom free. She had her 2nd ivig 2/2-3 as we attempt to clear up the remaining focus, task completion issues and go back to fill in the missing "learning holes."

 

Kudos to you for continuing to work the problem!

Prayers to you and Nathan. Keep us posted on his response to treatment.

 

Jill

[smartyjones]

so Jill -- what did they tell you to do based on that SPECT scan? that that was the way her brain was and nothing to do about it? try to regulate with SSRIs? have you ever or do you plan on another SPECT?

 

Adam -- thanks for posting. i had not heard of Dr. Chugani and am very interested in what you have to say.

[JAG10]

Oh, it was a whole cocktail!!!

 

They said first she needed a mood stabilizer (2mg Abilify), then the SSRI (25mg Zoloft) then a stimulant (Adderall XR, 20mg) Every time we would do a med check, it was a mess...a lot of...well, this is a little better, but now this is worse....kind of reports. Negative changes in behavior were never attributed to the meds. Really? Because we've never seen her be so sad and lethargic before? Oh, that is her underlying mood disturbance that was dormant before treatment. Huh?

 

I mean, I trusted the psychiatrist and tried all different brands of meds at all different doses in those 3 categories mentioned, but it was all wrong and there was no magic combination that worked for her. Dr. Elia was my second opinion after a few years of this and once she left the trail of bread crumbs that led to PANDAS, but then wouldn't treat because dd "had it too long already", I was off finally in the right direction.

 

There is NO underlying mood disorder, it was all bad side effects from meds and PAND/PITAND. She's a happy, sweet kid whose brain and self esteem have been through more than I can bare to think about (and that kinda thinking isn't productive anyway!!!) She's off all psych meds after 4 months HD abx followed by HD IVIG.

 

I don't plan to do another scan because it was an out of pocket fortune with the psych eval. and I don't think it would be of any benefit to us.